Hellobee

Two years ago, when HJ was five years old and in kindergarten, she started private occupational therapy at the recommendation of a developmental pediatrician we had seen. We had initially taken HJ to the developmental pediatrician for a formal neuropsychological evaluation. At the time, she was receiving special education services from our school district, but her IEP was still under a diagnosis of general developmental delay. I really wanted to see if there was more of a specific diagnosis that they could give HJ, and as a result, hopefully more effective and focused treatment.

Well, after several sessions with a team of psychiatrists, neurologists, and the pediatrician, the conclusion was well, inconclusive. Although the team of doctors was kind and accommodating, HJ was not very cooperative for most of the sessions, and I’m sure that had a lot to do with it. During the Autism Diagnostic Observation Schedule (ADOS) test, the pediatrician pulled out literally all his bag of tricks, including various toys, dolls, cars, blocks, etc… and HJ wasn’t having any of it.

The assessment is supposed to measure a child’s social and communication skills through observation and imaginative play. But every time the doctor brought out a new toy or doll and tried to engage HJ, she stared him down with a death stare or at most half-heartedly moved a couple things around. The most success he had was when he allowed HJ to pick out as many stickers as she wanted (she got 10!) and bribed her to participate a little bit after that. As the pediatrician said rather diplomatically afterwards, HJ’s performance during the evaluation did not allow for “reliable scoring” due to her “anxiety and lack of cooperation.”

If I hadn’t just spent a considerable amount of time, energy, and money taking HJ to these various evaluations, I would have found the situation funny, as basically we could have arrived at this same conclusion without a team of highly recommended specialists telling us what we knew all along. Regardless, the evaluation was helpful in that it really pushed us to find a private occupational therapist. We had been thinking about private therapy for a while, but our insurance did not cover it at the time, and I reasoned that she was receiving it at school anyway.

Well, it turns out that the occupational therapy at school focused more on fine motor skills, and a little bit less on coordination, development of her core and sensory integration — all the things that she was more in need of apparently.

We found a great pediatric therapy center which focused on a DIR/floor time (Developmental Individual Differences Relationship) model and her sensory processing issues. They have a great indoor gym area, and her progress in climbing, swinging, going down slides, jumping, etc… has really been incredible. When she first started, she would hardly ever go on a swing at the playground. Basically anything where her feet were off the ground was very anxiety provoking for her.

A couple months ago, I was amazed to see her climbing through one of these stretchy fabric tunnels that was attached to the ceiling and swaying back and forth. It was a pretty long tunnel, and dark inside, but she just plowed her way through it and came out with a huge smile at the other end. I was shocked.

When she was a preschooler, I couldn’t even get her to go into one of those colorful Gymboree tunnels at home unless she was carefully following her younger sister and we were looking at her through the other end. Which reminds me how disastrous a lot of those Gymboree types of classes were for HJ when I tried to take her to those in the past, but that’s another story…

HJ playing on the beach during spring break. A couple years ago, she wouldn’t even go near the sand!

Now that she is 7 years old and in 2nd grade, we are very, very happy with HJ’s occupational therapists and the “magic” they’ve worked on HJ. She has gone from an early intervention therapist who came to our house weekly and had her play with shaving cream and play dough and roll in the grass, to a private therapist who helped her with climbing, swinging, jumping, and generally trying new things, to a social skills group with three or four other girls that she now loves to go to.

We had been going every other week due to a conflict with her speech therapy, but we were recently able to work it out where she goes every week, and she never complains! Even though it is a minimum half hour drive each way and at the end of a long day of school. I drop her off for her 90 minute session and she never looks back. Her younger sister Lila actually tells me she wants to do it when she’s older because she thinks it looks so fun.

With everything seemingly going so well, it’s easy to think that she doesn’t need additional treatment. But I wouldn’t be telling the truth if I didn’t say she still struggles with major meltdowns and tantrums and difficulty with transitions. That, and a conversation with a dear friend who also has a daughter with some delays, has me considering getting another evaluation for HJ this year.

I know it’s going to be more time and money and with the possibility of not having a clearer answer at the end, but part of me still thinks there is more going on that we don’t really know yet. I suppose as long as we are getting the treatment she needs that is the most important thing, but her developmental delay eligibility for the IEP only lasts until she is 10 years old, and I would like to know before then if there are other things that we could be helping HJ work on in the meantime.

Have you had any experience with occupational therapy or evaluations for your child? I’d love to hear about your experiences!